New Hip, Who Dis?!

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New hip as seen via x-ray

A week ago yesterday I had my total hip replacement. And everything has gone so well. *knock on wood* I’m used to some complication happening so it is definitely a breath of fresh air for everything to go as planned. And this hip is WAY better than the temporary hip (called a spacer) that I had for 6 weeks before my surgery. The spacer was very uncomfortable and often painful. I basically laid around for 6 weeks, relaxed and did a little PT. I’m a little sore from my hip replacement but overall, I don’t have pain. I’ve been working hard on physical therapy exercises & walking. Starting yesterday my dad & I will be walking up and down the driveway everyday. Walking is the best exercise because it strengthens my muscles and increases my endurance. I’m using a walker because it allows me not to walk with a limp and I don’t want to get into a bad habit of walking with a limp. I’ve been having issues with my hip since last March. And they got really bad in October, which is when we decided I, for sure, needed a hip replacement. I was introduced to Dr. Hawken and immediately felt like he was the right guy for the job. He has done an incredible job and is an amazing doctor. So THANK YOU Dr. Hawken!!

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Practicing stairs at the hospital

I recently officially resigned from Lidl. In the last 2 years I only worked for 5 months, 8-10 hours a week. Then I had the issues with my hip and decided I needed more time off. So, I technically haven’t really worked in 2 years but was technically employed and on payroll. I’ve been doing a lot of thinking recently about what I want to do with my life and I’m not sure if finance is what I want to do anymore. So, I didn’t want to string Lidl along if I wasn’t sure that I wanted to come back and they also wanted a definitive answer of when I would come back, which I did not have. We ended on VERY good terms and I definitely plan to keep in touch with my team. That company is AMAZING and has been so good to me. So if there is a Lidl store near you, SHOP THERE. They deserve to succeed here in the United States. [I recommend their wine, chocolate & cheese.] I also know for sure I want to live a little with my new lungs. I really haven’t been able to because of all the complications I have had. My summer is full of a lot of travel & I am so excited!

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Walking the driveway with my dad

If I could do anything with my life it would be motivational speaking and starting a non-profit (if you have any experience in this, I’d love some help). I also plan to volunteer more with the CF Foundation and Donate Life/United Network for Organ Sharing.

Speaking of the CF Foundation, I was selected as an honoree for “DC’s Finest.” “The Cystic Fibrosis (CF) Foundation honors a select group of men and women from cities or regions across the country that are committed to professional growth through a guided fundraising and awareness campaign. These honorees exemplify strong leadership qualities, are active in their community and have excelled in their chosen professions. The honorees will enjoy many benefits throughout the campaign, primarily the knowledge that they are helping to better the lives of children and adults living with cystic fibrosis.” I have pledged to raise at least $2,500 dollars by August 22. If you’d like to contribute to my Finest Campaign please visit: https://metrodc.finestcff.org/jackieprice.

 It is also CF Awareness month. So if you head on over to my Instagram page, I am sharing facts about CF every day. 🙂

Health Update #1

My first health update on my blog. Where do I even begin? A lot has been going on!

Let me start with my lungs. My last pulmonary function test was 60%, my highest since transplant and my highest since before college! My x-ray and CT scans have all looked clear in recent months which means there aren’t any spots of pneumonia (bacteria causing mucus to stay trapped) which is also a really good sign. I’m hoping I can get my lung function above 65% with some good old fashioned exercise. I haven’t been doing a ton of exercise recently because of my hip…but my aunt and my friend Gabby’s mom have graciously donated me an elliptical and seated bike (both low impact and not hard on the joints). They will be put to good use and I am oh so grateful!! If I had to give my lungs a grade, I’d give them a B. The reason is there is always room for improvement & for the fact that I have been coughing up some nasty looking stuff every now and then recently. We believe this sputum has been coming as drainage from my sinuses and not necessarily my lungs. Which is actually a good thing, even though it’s not great.

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Those bugs don’t stand a chance against this strong girl!

This leads me to an update about my sinuses. A recent nasal swab showed that my sinus boogies are growing a couple bacterias and fungus. Bleh!! My sinuses have been a huge issue my entire life. It comes with CF. A little anatomy…The sinuses are considered part of the upper respiratory track which leads to the lower respiratory track…aka the lungs. This makes it especially important to keep them free from bacteria to avoid any possible drainage infecting my new air bags. To try to clear out the bacteria & fungus I will start IV antibiotics, change up the anti-fungal I am on, and have a sinus surgery next week to give them a good old fashioned “power washing”. We’re hoping this will get rid of all those bad buggies! This is usually an outpatient surgery but because of my lung transplant, I will spend one night in the hospital for monitoring.

My kidneys are stable. I am currently listed for a kidney transplant but the process is much different than a lung transplant and takes much much longer. The average wait time for a kidney is about 4 years!! It’s very complicated but I’ll try to explain the best I can…My current kidneys are working just enough to prevent fluid build up and remove any extra minerals, like potassium (too much in your body can actually cause dangerous heart rhythms) and phosphorus, from my body. If I stay very well hydrated my creatinine level (a reliable indicator of kidney function) will stay around 1.8-2 (normal level is between 0.5-1.1). I regularly see a team of nephrologists (kidney doctors) who work together with my lung transplant team to ensure my kidneys do not endure any additional damage and to try to keep them functioning for as long as possible. That is what I love about INOVA Fairfax Hospital, teams of all different types of doctors work together for their patients. And they are all friends, you can tell from the way they interact with each other.

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Getting an MRI of my hip – October 2017

Moving down to my hip. To be blunt, it’s not good. This was probably the toughest pill for me to swallow when I found out how bad it actually is. I have avascular necrosis (AVN) in both my hips but far worse in my left. AVN is essentially the death of bone caused by a lack of blood supply and is a possible side effect of prednisone. It causes a lot of pain at times & a limp when I walk. I have transplant friends who are 5+ years out and have never gotten this…So how did it happen? My doctors believe that the extremely high doses of prednisone I had last year (to save my life) combined with not being able to move for months caused the AVN to develop quickly. Unfortunately, there is no cure for this and my hip will need to be replaced. Timing is crucial though. The orthopedic surgeon wants me to be as far out from transplant as possible. But if I we wait too long there is a chance the ball of my hip will collapse in on itself which causes a lot of problems with the muscles and makes the replacement more difficult. Not to mention a lot more pain! So, my doctors & I decided we would aim for January. This will allow me enough recovery time to be able to enjoy my summer with friends but also far enough out from transplant. And time to zap the bugs in my nose! We do not want any type of infection having any opportunity to make it’s way into my new hip.

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Wall art in Washington, DC

I think that about covers it. This all may sound a lot worse than it is but to me, if my lungs are healthy and I am breathing, then I am one happy girl!! Yesterday I spent the day in DC with my friend Amber. We had such a fun time finding amazing wall murals and eating some great food. We decided to try out a new shared biking system called MoBike. The nice thing about these bikes is that they can be parked anywhere, you don’t have to find a station to dock it once you’re done. Highly recommend. According to the MoBike app we rode for about 2 hours and covered about 13 miles. I was breathing pretty hard up the inclines and had to walk my bike some, but I made it! That should give you an idea as to how my lungs are doing and my energy level. Both good!!

I hope everyone reading this has an amazing rest of their week! Stay healthy & happy, my friends. 🙂